2016 Report on. Diabetes on Prince Edward Island

Transcription

1 2016 Report on Diabetes on Prince Edward Island

2 2016 Report on Diabetes on Prince Edward Island ABOUT CANADIAN DIABETES ASSOCIATION The Canadian Diabetes Association (CDA) is a registered charity that helps the 11 million Canadians living with diabetes or prediabetes. We lead the fight against diabetes by helping those affected by diabetes to live healthy lives, preventing the onset and consequences of diabetes, and discovering a cure. Dr. Charles Best, co-discoverer of insulin, helped create the Diabetic Association of Ontario in the 1940s which became the CDA in The CDA s Diabetes Charter for Canada sets out a vision that all Canadians with diabetes have the supports needed to achieve their full health potential.1 The vision of the Canadian Diabetes Association for the Diabetes Charter for Canada is a country where people with diabetes live to their full potential. SUPPORT CARE EQUI TY The guiding principles of the Canadian Diabetes Association in developing this Charter are to: Ensure that people who live with diabetes are treated with dignity and respect. Advocate for equitable access to high quality diabetes care and supports. Enhance the health and quality of life for people who live with diabetes and their caregivers. Canadians Living with Diabetes* Have the Right to: Be treated with respect, dignity, and be free from stigma and discrimination. Affordable and timely access to prescribed medications, devices, supplies and high quality care, as well as affordable and adequate access to healthy foods and recreation, regardless of their income or where they live. Timely diagnosis followed by education and advice from an interprofessional team which could include the primary care provider, diabetes educator, nurse, pharmacist, dietitian and other specialists. Emotional and mental health support, as well as support for their caregivers if needed. Be an active partner in decision making with their health care providers. Have access to their medical records and other health information when requested, and have it easily understood. Diabetes information, education and care that take into account a person s age, culture, religion, personal wishes, language and schooling. Have their eyes, feet, kidneys, blood glucose control, cardiovascular risk factors and mental health checked as often as recommended by current clinical practice guidelines. *and their informal caregivers where relevant Affordable access to insurance coverage. Fully participate in daycare, pre-school, school and extracurricular activities, receiving reasonable accommodation and assistance if needed. Supportive workplaces that do not discriminate and make reasonable accommodation as needed. Appropriate and seamless transitional care that recognizes the progression of the disease. Canadians Living with Diabetes Have the Responsibility to: Self-manage to the best of their abilities and personal circumstances, including a healthy diet, exercise, following care plans and attending appointments. Be honest and open with health providers about their current state of health so that the most suitable care plans can be created. Actively seek out education, information and support to live well with diabetes. Respect the rights of other people with diabetes and health care providers. Governments Have the Responsibility to: Form comprehensive policies and plans for the prevention, diagnosis, and treatment of diabetes and its complications. Collect data on diabetes burden, such as costs and complications, and to regularly evaluate whether progress is being made. Guarantee fair access to diabetes care, education, prescribed medications, devices, and supplies to all Canadians, no matter what their income or where they live. Address the unique needs and disparities in care and outcomes of vulnerable populations who experience higher rates of diabetes and complications and significant barriers to diabetes care and support. Implement policies and regulations to support schools and workplaces in providing reasonable accommodation to people with diabetes in their self-management. Health Care Providers Have the Right to: Ongoing training, funding and tools needed to provide high quality diabetes care. Work in well-coordinated teams, either at the same location or virtually where support from specialists who provide diabetes care can be obtained within a reasonable time. Health Care Providers Have the Responsibility to: Treat people with diabetes as full partners in their own care. Learn and apply up-to-date evidenced-based clinical practice guidelines when caring for people with diabetes. Diagnose people living with diabetes as early as possible. Help people with diabetes and their caregivers navigate the health care system. Schools, Pre-schools, and Daycares Have the Responsibility to: Ensure staff and the child s peers have accurate information about diabetes, provide a safe environment for diabetes self-management and protect children with diabetes from discrimination. Workplaces Have the Responsibility to: Create an environment where people can reach their full potential by providing accommodation and eliminating discrimination against people with diabetes. The Canadian Diabetes Association Has the Responsibility to: Strongly advocate for the rights of people living with diabetes on behalf of Canada s diabetes community. Raise public awareness about diabetes. Work to ensure the accuracy of information about diabetes in the public domain. Partner with researchers to improve the planning, provision and quality of diabetes care by promoting and applying research. Advocate for equitable access to diabetes care, education, medications, devices, and supplies. diabetes.ca BANTING CARE EQUITY SUPPORT CARE EQUITY SUPPORT CARE EQUITY SUPPORT CARE EQUITY SUPPORT The report was supported by an unrestricted grant from Novo Nordisk Canada. Suggested citation: Canadian Diabetes Association. (2016) Report on Diabetes on Prince Edward Island. Toronto, Ontario: CDA.

3 TABLE OF CONTENTS Executive Summary 2 Methods and data sources 2 Introduction 3 Diabetes on Prince Edward Island 4 Risk factors for type 2 diabetes on PEI 4 Chapter 1: Diabetes in schools 6 Liz s story 7 Children with diabetes in school 8 Canadian Diabetes Association recommendation 9 Chapter 2: Access to supplies 10 Doreen s story 11 Test strips coverage 13 Canadian Diabetes Association recommendations 13 Chapter 3: Cost of managing diabetes 14 Anthony s story 15 Coverage for insulin pumps and supplies 16 Cost of diabetes management 17 Canadian Diabetes Association recommendation 17 Conclusion 18 References 19 diabetes.ca/charter 1

4 EXECUTIVE SUMMARY Today, about 49,000 Prince Edward Island residents, or 32 per cent of the provincial population, are living with diabetes or prediabetes. Risk factors such as the rapidly aging population; high rates of overweight and obesity in adults and youth; lack of physical activity and a healthy diet; and heavy use of tobacco among Islanders will continue to drive type 2 diabetes prevalence. By 2026, the number of people diagnosed with diabetes will increase by 41 per cent. Diabetes is costing the province $14 million in direct health-care costs per year. It is essential for Islanders with diabetes to have affordable and timely access to all the supports they need to effectively manage their disease, in order to avoid or at least delay serious and costly complications, including heart attack, stroke, vision loss, kidney disease and amputation. On PEI, public coverage for diabetes supports is available, but to varying degrees, and not to everyone that needs it. Without private insurance, many Islanders may have to shoulder high out-of-pocket costs associated with diabetes management. The true stories contained within this report were shared by people living with diabetes or caring for someone with diabetes on PEI. The CDA advocates to governments for sound policies on a broad range of issues that will improve the health of people with diabetes, prevent diabetes and its complications, and reduce health-care costs associated with diabetes. Given the burden of diabetes on PEI and findings in this report, the CDA urges the Government of Prince Edward Island to adopt the following recommendations as measures to reduce the burden of diabetes in this province: Develop and implement a policy to ensure students are supported with diabetes management at school, based on the CDA s Guidelines for the Care of Students Living with Diabetes at School, and the Canadian Paediatric Society position statement Managing type 1 diabetes in school: recommendations for policy and practice; Revise the current policy for blood glucose test strip coverage for people with diabetes to expand coverage, to ensure all Islanders with diabetes have needed strips for optimal diabetes management; Expand the financial coverage for insulin pumps and supplies to all individuals with type 1 diabetes, regardless of age. METHODS AND DATA SOURCES Data provided in this report were drawn primarily from Statistics Canada and Prince Edward Island government publications. The CDA estimated out-of-pocket costs for Prince Edward Island residents with type 1 and type 2 diabetes based on composite case studies. The CDA also estimated diabetes prevalence and projections for Prince Edward Island based on national surveillance data. This report includes the most recent available data to describe the burden of diabetes. The risk factors are presented in age-standardized rates for ease of comparison with Canadian average rates. It is important to note that on-reserve First Nations Peoples and people without a fixed address are excluded from national surveys administered by Statistics Canada. Also note that Statistics Canada estimates presented in this report are self-reports, which may be subject to reporting bias, especially for socially undesirable behaviours. Hence, these data likely underestimate the burden of diabetes and modifiable risk factors in the province. To facilitate a deeper understanding of how diabetes impacts everyday lives of Prince Edward Island residents with the disease, we included personal stories from people with diabetes and their family members who experience first-hand the challenges and successes in managing diabetes Report on Diabetes on Prince Edward Island

5 INTRODUCTION Diabetes is increasing at an alarming rate across Canada, affecting millions of people and their families, and contributing to the ever-increasing health budgets across the country. Every year, diabetes causes about 30 per cent of strokes, 40 per cent of heart attacks, 50 per cent of kidney failure (that requires dialysis) and 70 per cent of nontraumatic amputations. Effective diabetes management can prevent or delay these devastating and potentially life-threatening complications. But not all people with diabetes on PEI have the financial resources to pay for prescribed medications, devices, supplies or other supports to avoid complications. For these people, diabetes management may mean choosing between rent and medications, or stretching their use of supplies so they can last longer (e.g. blood glucose test strips and pen needles). The 2016 Report on Diabetes on Prince Edward Island includes the most recent data available on the risk and burden of diabetes in this province. The report also helps to illustrate the experience of living with diabetes through the voice of three people who live with diabetes or care for someone with diabetes. These stories provide a window into the successes and struggles experienced by many people daily as they strive to live a healthy life with diabetes or help their loved ones live well with the disease. In the end of each chapter, we offer the Government of Prince Edward Island our recommendations on priorities that require urgent attention in order to bend the impact curve of diabetes in the province. The Diabetes Charter for Canada released by the CDA in 2014 outlines a vision: all people with diabetes in Canada deserve affordable and timely access to medications, devices, supplies, high quality care, healthy foods and other supports needed to effectively manage their diabetes, regardless of their income, or where they live. This is CDA s vision for all people with diabetes on PEI. All Islanders with diabetes have the right to needed supports to achieve their full health potential. This report acts as a tool to guide the way to achieve this vision. diabetes.ca/charter 3

6 DIABETES ON PRINCE EDWARD ISLAND RISK FACTORS FOR TYPE 2 DIABETES ON PEI The Government of PEI reported that the diabetes prevalence on PEI had risen from 3.9 per cent in 2000 to 5.7 per cent in 2009 (11,000 people), equivalent to a 46 per cent increase over the span of ten years.2 The incidence rate remained constant during this time. One of the main contributors for the increase of diabetes prevalence is thought to be the province s older population it was estimated that 25 per cent of Islanders aged lived with diabetes in Statistics Canada estimated that about 19 per cent of residents in the province are seniors in Older age, particularly 40 and older, increases one s risk for type 2 diabetes. The CDA has estimated that in 2016, 16,000 people live with diabetes on Prince Edward Island, representing 11 per cent of the total population. The number of people diagnosed with diabetes has increased by 68 per cent over the past decade and is projected to increase by another 41 per cent by While the diabetes prevalence is high, this does not represent the full burden. Many people with diabetes are undiagnosed, and many others live with prediabetes, a precursor to type 2 diabetes. With undiagnosed diabetes and prediabetes factored in, an estimated 49,000 people, or 32 per cent of the province s population, currently have either diabetes or prediabetes. Compared to those without diabetes, Islanders living with diabetes are hospitalized more often and their length of hospitalization is 3.5 times longer.2 Specifically, people with diabetes on PEI are hospitalized: Thirteen times more often for lower limb amputations Over four times more often for heart failure Three times more often for ischemic heart disease Over two-and-a-half times more often for heart attack Over two times more often for chronic kidney disease Over two times more often for stroke2 The CDA estimates that diabetes is currently costing the provincial health-care system $14 million, including hospitalizations, doctor visits and inpatient medications Report on Diabetes on Prince Edward Island In addition to age, ethnicity, sex and family history are all factors that impact a person s risk for type 2 diabetes. While these factors are out of a person s control, risk factors related to lifestyles can be modified to reduce the risk of type 2 diabetes as well as to improve the management of diabetes. In this report, we will focus on three modifiable risk factors: unhealthy eating, physical inactivity and tobacco use. We also present data on the prevalence of overweight and obesity, a key risk factor for type 2 diabetes.

7 Tobacco use is linked to increased risk for diseases such as lung cancer, heart attack and stroke. It is also an independent risk factor for type 2 diabetes people who smoke 25 or more cigarettes daily have double the risk for diabetes compared to nonsmokers, regardless of whether they have other risk factors for diabetes Smokers are also at high risk of developing metabolic syndrome, a common condition characterized by a cluster of risk factors occurring together, which puts people at higher risk for chronic diseases such as type 2 diabetes and cardiovascular disease; these risk factors include high fasting blood glucose, abdominal obesity, high triglycerides, i low HDL-C (high-density lipoprotein cholesterol) ii and high blood pressure. 8 In 2014, 22 per cent of Prince Edward Island residents reported daily or occasional tobacco use; this was far more prevalent in men (28 per cent) than in women (16 per cent). The percentage of Islanders who smoked daily since 2010 has been consistently higher than the Canadian average. 9 In additional to using tobacco, a significant proportion of Islanders are physically inactive and do not eat enough fruit and vegetables. In 2014, 48 per cent of people reported being inactive during leisure time, including 46 per cent in men and 50 per cent in women. The rates of physical inactivity on PEI were similar to the Canadian average rates between 2003 and During the same period, the percentage of population consuming five or more servings of fruit and vegetable daily was consistently lower on PEI than in Canada in general, with 31 per cent reported in Physical activity and healthy eating are important for general health, particularly for people at risk of or living with diabetes. Physical activity has been shown to improve blood sugar control, reduce insulin resistance, and increase cardiorespiratory fitness and energy. It also helps maintain weight loss and reduces blood pressure. A moderate weight loss (that is, five per cent to 10 per cent of body weight) achieved through physical activity combined with healthy eating can improve blood sugar control substantially, and reduce the risk of developing cardiovascular disease and type 2 diabetes. Among adults on PEI, the rates of overweight and obesity, as well as obesity alone, were higher than the Canadian average rates in almost every year between 2003 and In 2014, 60 per cent of adults on PEI were overweight or obese (24 per cent were obese). It is also concerning that 26 per cent of youth on PEI were reported to be overweight or obese in that same year, based on self-reported height and weight. 10 Overweight and obesity has been linked with many chronic diseases and is a key risk factor for type 2 diabetes. i ii The main component of vegetable oil and animal fats. In the human body, high levels of triglycerides raise the risk of heart disease and stroke. A type of cholesterol that is involved in transporting cholesterol and other lipids from the body. It is sometimes called good cholesterol because high levels of HDL can reduce the risk of cardiovascular disease. i The main component of vegetable oil and animal fats. In the human body, high levels of triglycerides raise the risk of heart disease and stroke. ii A type of cholesterol that is involved in transporting cholesterol and other lipids from the body. It is sometimes called good cholesterol because high levels of HDL can reduce the risk of cardiovascular disease. diabetes.ca/charter 5

8 CHAPTER 1: Diabetes in schools Report on Diabetes on Prince Edward Island

9 Liz s story Liz MacArthur s son Liam has type 1 diabetes. Liz told us about the challenges she has faced daily to ensure her son was safe when he was attending school, and the urgent need for a school policy and staff education. Liam MacArthur was diagnosed with type 1 diabetes the summer before he entered grade 3. Now 19 years old, he may get to see the PEI school district finally implement a diabetes management policy for students before he graduates from university. For more than a decade, his mother, Liz, has been advocating for the province to implement a policy that would ensure school staff have accurate information about diabetes and provide a safe environment for students with diabetes. When we first went to Liam s school to ask for support in managing his diabetes, they had no idea how to help us, she says. There was no policy, no documentation, no training for teachers or administrators. Although most teachers and staff were willing to do what they could, they had no knowledge, information, or tools to help us. The Cornwall family was fortunate to receive what Liz calls a fantastic initiation to managing diabetes from a multidisciplinary team at the Diabetes Education Centre in Charlottetown. They taught Liam how to test his blood sugar and inject himself with insulin. But because he was still too young to calculate his insulin dosage and with no help forthcoming from the school he had to call his parents at least once a day (usually at lunch) to tell them the reading on his blood glucose monitor. His grade 3 teacher refused to have anything to do with Liam s diabetes, recalls Liz. His advice was to send Liam with the exact same lunch every day, thinking that would mean his insulin dose would always be the same. Liz, an educator herself, tried to educate staff and students about diabetes and its potentially serious consequences. Each year, she would meet with Liam s principal and homeroom teacher. At the beginning of each new school year, she would give classroom presentations to his classmates, showing them Liam s monitor and injection pen and explaining what to do if he starting showing signs of hypoglycemia. But without a written policy and procedures, the information wasn t consistently communicated. One substitute teacher wouldn t let Liam call his parents with his daily blood sugar reading because students weren t supposed to have cell phones. Another teacher told Liam to deal with a high blood sugar level by running around the school. Liam was repeatedly sent to get a snack by himself, a dangerous situation when a child is having a low blood sugar reaction. Liz emphasizes that she doesn t expect all school staff to inject students with insulin or know how to count carbohydrates. But those working closely with a child, the teachers and educational assistants (if required), would be familiar with the Individual Care Plan, and receive training on how to support the child with diabetes at school. She would also like to see at least two designated staff members trained to have a thorough understanding of diabetes management, and know how to handle emergency situations. My hope is that with a policy in place, information will be consistently disseminated, teachers will know what to do so there won t be any guessing, and parents can feel confident that their child is safe at school. she says. 7

10 CHILDREN WITH DIABETES IN SCHOOL In Canada, one in 300 children has diabetes; this means most schools on PEI have at least one student with diabetes at any given time. The great majority of these children have type 1 diabetes, which requires treatment with insulin. These children need to monitor their blood sugar levels, closely and carefully balance diet and exercise with insulin intake every day. Ongoing self-management helps prevent serious problems from occurring, from emergency situations such as severe hypoglycemia (low blood sugar) to long-term complications due to ongoing high blood sugar. Given they spend 30 to 35 hours in school per week, these children and their families need better support to effectively manage diabetes while attending school. Learning how to effectively manage their diabetes at a young age is beneficial for these children as they become adults and can help prevent serious complications as a result of diabetes later in life Report on Diabetes on Prince Edward Island

11 While most students can manage their diabetes independently, some may need help with blood sugar testing or insulin administration. As children under age five are the fastest growing age group with type 1 diabetes, 11 these very young school-aged children need a great deal of support with their diabetes management. Currently, the level of support for and knowledge of diabetes management is inconsistent and varies from school to school, and among school personnel. Some schools have protocols for emergency situations, while others do not. The lack of and inconsistent support for children with diabetes in school can result in life-threatening situations, parents having to leave work to attend to their children s diabetes needs or even exit the work force, children being withdrawn from school activities, etc. Misinformation or lack of knowledge about diabetes can make children unable to manage their diabetes safely, or exclude them from being full and equal participants in school. CANADIAN DIABETES ASSOCIATION RECOMMENDATION The Canadian Diabetes Association believes all students living with diabetes have the right to be full and equal participants in school and all school-related activities without the fear of being excluded, stigmatized, or discriminated against. This belief forms the basis of the CDA s position on the level and type of support needed to care for students with diabetes, which include the following roles specific to schools boards, principals and school personnel: The PEI Public Schools Branch should develop and communicate a comprehensive diabetes management policy that includes the roles and responsibilities of the student living with diabetes, their parents/guardians and school personnel in keeping with the Canadian Diabetes Association s Guidelines for the Care of Students Living with Diabetes at School, 12 and the Canadian Paediatric Society position statement Managing type 1 diabetes in schools: recommendations for policy and practice. 13 School principals should work with each student living with diabetes, their parents/guardians and health-care professionals to develop and communicate to school personnel an Individual Care Plan (ICP) that complies with the student s prescribed diabetes management regimen. Each ICP should be comprised of a daily diabetes management plan and a diabetes emergency plan. Schools should provide all students living with diabetes with a clean, convenient and safe area for diabetes self-care, and respect students personal preference for privacy. Self-care tasks include blood glucose monitoring and the administration of insulin via injection or insulin pump. The PEI Public Schools Branch should be responsible for providing appropriately trained personnel to safely administer insulin and monitor blood glucose, food intake and activity for students who are unable to perform these activities independently. School personnel should be trained to recognize emergency situations and to respond appropriately according to the student s Individual Care Plan (ICP). School personnel should be trained to administer glucagon in the event of a severe hypoglycemic reaction. Across Canada, five out of 13 jurisdictions have policies to ensure students with diabetes have the needed support for diabetes management at school. Currently, Prince Edward Island does not have such a policy in place. Due to the dire needs for consistent support for students with diabetes across schools in the province, the CDA strongly advocates for a provincial policy or guidelines to ensure all children and youth with diabetes in school are properly supported. A provincial policy or set of guidelines, informed by CDA s guidelines and the Canadian Paediatric Society position statement, would put standards in place to effectively address the varying levels of support for children with diabetes in school, provide adequate support for optimal diabetes management, and enhance overall safety, participation, and physical and emotional well-being of each student with diabetes. diabetes.ca/charter 9

12 CHAPTER 2: Access to supplies Report on Diabetes Prince Edward Island

13 Doreen s story 68-year-old Doreen Clarke cannot afford to retire due to her type 2 diabetes. From blood glucose test strips to healthy foods, it is too costly to live with diabetes without financial support. Doreen Clarke is a flagger, controlling traffic through construction sites around Charlottetown. It s hard work, especially in bad weather or when she is not feeling well. At 68 and dealing with multiple health issues including type 2 diabetes, Doreen says she would like to take it easier but you can t afford to retire when you have diabetes. Doreen and her family are well versed in the challenges of living with type 2 diabetes. Three siblings (all of whom live on the Island) have the disease, as did a late brother and her mother. Another sister, who is disabled and lives with Doreen, has prediabetes. We all complain about the cost of test strips, she says. Diagnosed with type 2 diabetes when she was 64, Doreen has struggled with high blood sugar levels for the past three years. Her dietitian wants her to test her blood every day in order to gain a better understanding of how her food choices and activity affect her blood sugar levels. But without provincial coverage for her test strips as she is not using insulin, and without private insurance, she finds herself skipping the tests because she can t afford the $75 to $100 price of a box of 100 strips. Medications are also costly. She has partial coverage under the provincial plan, but the $11 copay becomes burdensome when multiplied per prescription Doreen requires a total of four medications (two for diabetes, two for other related conditions). Trying to follow the dietitian s meal plan recommendations is financially difficult. I am supposed to eat a lot of vegetables and fruit every day, but there is nothing cheap about eating healthy, Doreen says. Although she tries to watch for sales on healthy choices, she understands why many people opt for junk food instead. It fills you up and costs a lot less. I think anything to do with diabetes whether test strips, or medications should be covered by the province, she says. With the price of everything, people with diabetes have it very tough. It s bad enough when you are working, and near impossible when you retire. 11

14 Report on Diabetes on Prince Edward Island

15 TEST STRIPS COVERAGE People with diabetes use test strips to perform selfmonitoring of blood glucose (SMBG), which is a valuable tool to help people manage their diabetes through assessing whether treatment is working. SMBG is also the only way to immediately determine if a person is experiencing hypoglycemia (low blood sugar) which can be life-threatening if not properly treated right away. The Canadian Diabetes Association recommends SMBG must be individualized to each person s unique circumstances. 14 People with diabetes should work with their health-care providers to determine frequency and a testing pattern that is clinically appropriate and that works best for them. The pattern of blood glucose levels informs healthcare providers and people with diabetes how well a treatment is working including medications and lifestyle management. People with diabetes can adjust their food or exercise themselves based on SMBG results to help stay on target. Currently, eligible Islanders who use insulin have up to 100 blood glucose test strips covered per month through the province s Diabetes Drug Program; they pay $11 in copayment per prescription. 15 People who do not use insulin, however, have to pay out of pocket or rely on private insurance to pay for the needed test strips. Many people with type 2 diabetes do not use insulin; therefore, they do not have any assistance from the government for prescribed test strips. Given 90 95% of people with diabetes have type 2 diabetes, the test strips coverage in the province benefits only a small percentage of Islanders with the disease. While there are no published statistics about the specific percentage of Islanders who cannot afford test strips, recent national surveys show that 30 per cent of Canadians with diabetes have no insurance to cover the cost of equipment or supplies to monitor their blood glucose, 16 and that 25 per cent of those with diabetes reported their adherence to treatment plans are impacted by cost. 20 CANADIAN DIABETES ASSOCIATION RECOMMENDATIONS People with diabetes need timely and affordable access to prescribed medications, devices and supplies to optimally manage their disease and avoid serious and costly complications. As people with diabetes are a heterogeneous group, there is no one-size-fits-all pattern on how often a person with diabetes needs to test their blood glucose. SMBG needs to be individualized, based on the person s circumstances and needs. Timing and frequency of SMBG should be determined based on several factors, including the type of diabetes, the treatment prescribed, the need for information about blood glucose levels prompted by a tendency to have hypoglycemia, lack of awareness of hypoglycemia, inadequate glycemic control, occupational requirements and acute illness; and the individual s capacity to use the information from testing to modify behaviours or adjust medications, such as literacy and numeracy skills and knowledge of what to do with the results. For a comprehensive overview of CDA s recommendations on the frequency of SMBG, please visit the Canadian Diabetes Association 2013 Clinical Practice Guidelines for the Prevention and Management of Diabetes in Canada, and tools for people with diabetes and health-care professionals. The current public coverage for test strips does not meet the needs of Islanders with diabetes using or not using insulin. Without private insurance, Islanders with type 2 diabetes who do not use insulin need to pay for all of their test strips out of pocket, and Islanders using insulin need to pay for all additional strips that they need in order to adhere to prescribed treatment plans. PEI is one of the few provinces that do not provide any financial assistance to cover the cost of test strips for people with diabetes not using insulin. Therefore, the CDA urges the Government of PEI to review the current policy for strip coverage against the most recent evidence on SMBG, and introduce changes to ensure all Islanders with diabetes have access to test strips they need to effectively manage their diabetes and avoid serious complications. diabetes.ca/charter 13

16 CHAPTER 3: Cost of managing diabetes Report on Diabetes on Prince Edward Island

17 Anthony s story Insulin pump therapy has improved a lifetime of lows for Anthony Millar, who has type 1 diabetes. However, the cost of a pump and pump supplies, along with other needed supports for optimal diabetes management is creating a huge dent in his budget. Anthony Millar was diagnosed with type 1 diabetes at the age of 14, and for the next 12 years his blood sugar levels dipped dangerously low almost every single day. Hypoglycemia, as the condition is known, would cause him to sweat profusely, shake, slur his speech, loose focus and feel week. The last straw in his constant struggle to maintain near-normal blood sugar levels came in 2009 when Anthony had to drop out of training to become an RCMP officer. Within the first week at training camp, I was having five or six lows a day. Even with eating more and adjusting my lifestyle and insulin doses, I felt that my diabetes was out of control. I lost 17 pounds in a week, he remembers. Returning home to Summerside from the Regina camp, he vowed to get an insulin pump. I had a lot of friends who were using an insulin pump, and my health-care team really encouraged me to try it. They knew it would be so much better for me, says Anthony, now 31. Once on the pump, the improvement to his health and lifestyle were total and immediate. For the past seven years, his blood sugar levels have been largely within target, and his episodes of hypoglycemia have dropped from daily to two or three times per month. He says the pump has allowed him to be more spontaneous and gives him the freedom to sleep in, eat when he wants, exercise, and leave the house without a backpack of supplies. This dramatic improvement comes with a significant personal financial burden, however. Although the $7,000 cost of Anthony s first insulin pump was fully covered by his then-employer, he is now a contract worker and his diabetes expenses are only partially covered by his wife s insurance. A new pump, which he will need within the next few months, will cost him about $1,400 out of pocket. He admits that s not unreasonable when amortized over the average fiveyear lifespan of the unit. It s the monthly expenses that hurt his budget: infusion sets, cartridges, testing strips and insulin cost $150 out of pocket (someone without coverage would pay more than $300 per month for these supplies). In addition, he has to buy glucagon kits. When I didn t have insurance coverage, glucagon cost me $100 every three months. There were times when I felt like I couldn t afford to replace it even though it is a life-saving treatment, he says. Under the government s current plan, people with diabetes can buy one box of 100 test strips per month. One box isn t even close to enough, says Anthony, who has to test his blood sugar eight or nine times a day in order to maintain good diabetes control. At full price, each additional box costs up to $100. As a result, some people skip testing their blood, even when they feel it may be going low. Anthony s father also has type 1 diabetes, and when Anthony was a teen and the family didn t have any additional insurance coverage, father and son would sometimes have to share test strips until the next payday. It is discouraging, Anthony says, to see the government take a shortsighted approach to diabetes management. Fewer people are eligible for pump coverage under the current restrictive guidelines, and young people are giving up the pump when they can no longer afford it as adults. The government needs to think about the future health of people with diabetes. If they put money into helping us manage our diabetes and stay healthy now, they will save a lot of money in complications like kidney dialysis and hospitalizations down the road. 15

18 COVERAGE FOR INSULIN PUMPS AND SUPPLIES In its 2014 budget, the Prince Edward Island government introduced a pediatric insulin pump program that provides assistance to cover up to 90 per cent of the cost of insulin pumps (every five years) and pump supplies for type 1 diabetes under 19 who are deemed good candidates by their diabetes care team. 19 The percentage of eligible coverage depends on income levels. Supplies covered by the program include: Infusion sets (maximum of 140 sets per year) Reservoirs (maximum of 140 per year) Site inserts maximum of one replacement device per year) Skin adhesive wipes (maximum of 150 per year) Sterile transparent dressings (maximum of 200 per year) While the PEI insulin pump program has benefited those who qualify, Health PEI has spent only about 10 per cent of the amount budgeted for the insulin pump program since it was launched in Recently, the program funding was significantly reduced from $400,000 to $200,000 a year. Every province and territory in Canada has an insulin pump program with varying age thresholds as part of eligibility criteria. Currently Alberta, Ontario, the three Territories and Non-Insured Health Benefits program (NIHB) fund insulin pumps and supplies for eligible individuals without age restrictions. Below is a snapshot of insulin pump program coverage across Canada regarding age thresholds. Overview of coverage for insulin pumps and supplies, age thresholds PROVINCE/TERRITORY INSULIN PUMPS PUMP SUPPLIES British Columbia 25 and under All ages Alberta All ages All ages Saskatchewan 25 and under 25 and under Manitoba 17 and under 17 and under Ontario All ages All ages Quebec 17 and under 17 and under New Brunswick 18 and under 18 and under Nova Scotia 25 and under 25 and under Prince Edward Island 18 and under 18 and under Newfoundland and Labrador 24 and under 24 and under Yukon/Nunavut/Northwest Territories All ages All ages Non-Insured Health Benefits program All ages All ages Report on Diabetes on Prince Edward Island

19 COST OF DIABETES MANAGEMENT On Prince Edward Island, public coverage for drug therapy to treat diabetes varies based on a person s income level, prescribed therapy and age the level of coverage impacts out-of-pocket costs. The CDA estimates out-of-pocket costs for Islanders with diabetes who do not have private insurance. A person with type 1 diabetes taking insulin through multiple daily injections may spend an estimated $1,500 a year to manage diabetes regardless of income. For people who are on insulin pump therapy, age and income are two key factors in determining the out-of-pocket cost. The provincial pediatric insulin pump program assists with the treatment cost for young people under the age of 19. Young people within this threshold may still need to pay $1,900 $2,600 a year in copayment for the pump and pump supplies, depending on household income, as well as additional cost associated with insulin pump therapy including insulin and additional test strips and lancets. 19 For Islanders above age 19, being on insulin pump therapy could mean an annual out-ofpocket cost of more than $5,000. Overall, government funded programs may offset between per cent for type 1 diabetes treatment. Depending on therapy, some Islanders with type 2 diabetes may receive very limited assistance from government programs if they do not have private insurance. Based on our scenario, Islanders with type 2 diabetes not using insulin may need to pay almost the full amount for their prescribed treatment at $1,700 per year this cost can be a huge burden for those earning a low income and seniors. It is important to note that our estimates are based on composite case studies, thus may not reflect the outof-pocket costs for all people with diabetes in the province. Even with private insurance, cost may still be a struggle to those with diabetes, due to incomplete coverage or difficulty in obtaining insurance. And insurance plans are not always accessible to those with diabetes: 15 per cent of residents with diabetes in Atlantic provinces said they had difficulty obtaining insurance due to their diabetes, and 21 per cent said the cost of diabetes impacted their adherence to treatment. 20 The impact was most significant for lower income earners. CANADIAN DIABETES ASSOCIATION RECOMMENDATION Currently, an estimated 800 1,600 Islanders are living with type 1 diabetes; they need insulin every day. Many inject insulin manually several times a day, while others use an insulin pump to deliver the appropriate amount of insulin every day. As with all diabetes therapies in general, the use of insulin pumps should take into consideration an individual s needs and circumstances. When used appropriately, insulin pump therapy can help people achieve target blood glucose levels and prevent potentially debilitating and life-threatening complications. There is evidence that intensive insulin therapy using an insulin pump can lead to better glucose control compared to multiple daily injections of regular or long-acting insulins for individuals who are clinically eligible. However, the current insulin pump program on PEI provides coverage for pumps and supplies for those under the age of 19. Due to the high cost of an insulin pump and pump supplies, the age restriction essentially denies the access to an effective method of delivering insulin to other people with type 1 diabetes who may benefit from this therapy. According to CDA s estimates, when the cost of treating downstream complications are considered, an investment into an expanded insulin pump program will improve health outcomes in people with diabetes on PEI resulting in $450,000 in net savings for the province by Type 1 diabetes is a lifelong disease, and people who are considered good candidates by health-care professionals for insulin pump therapy should have access to this option, regardless of age. The CDA urges the Government of Prince Edward Island to lift the age restriction of the insulin pump program. The CDA also asks that the Government review the current program so that more costs are covered and more people can benefit from the program. By expanding the insulin pump program and making the current program available to all Islanders with diabetes, the Government will help people effectively manage their diabetes and prevent serious complications, including heart attack, stroke, kidney failure, blindness, amputation and depression, which account for 80 per cent of the cost of diabetes to the health-care system. diabetes.ca/charter 17

20 CONCLUSION Personal stories from three Islanders living with or caring for someone with diabetes speak to the urgent need for government action. Islanders need and deserve a provincial policy to protect children with diabetes in school and better access to supports for effective self-management, including insulin pumps and test strips. Diabetes on Prince Edward Island will continue to grow at an alarming speed. While the recentlyintroduced PEI diabetes strategy and the Government s renewed focus on diabetes are critical components of the solution, the support for diabetes management must be enhanced to keep pace with the increasing demands of diabetes on the health-care system. We urge the Government to implement the recommendations from this report, to ensure Islanders with diabetes have the support to achieve their health potential. With concerted efforts and strong leadership from the Government, in close collaboration with key stakeholders in the diabetes community, we can bend the impact curve of diabetes and significantly improve the lives of those with diabetes and all Islanders Report on Diabetes on Prince Edward Island

21 REFERENCES 1 Canadian Diabetes Association. (2014). The Diabetes Charter of Canada. Toronto, ON: CDA. Available from Health PEI. PEI Diabetes Strategy Retrieved from pdf 3 Canadian Diabetes Association. (2013). Canadian Diabetes Cost Model. 4 Statistics Canada. Table Estimates of population, by age group and sex for July 1, Canada, provinces and territories, annual (persons unless otherwise noted), CANSIM (database). (accessed: October 14, 2016) 5 Rimm, E.B., Chan, J., Stampfer, M.J., et al. (1995). Prospective study of cigarette smoking, alcohol use, and the risk of diabetes in men. BMJ, 310, Shi, L., Shu, X., Li, H., et al. (2013). Physical activity, smoking, and alcohol consumption in association with incidence of type 2 diabetes among middle-aged and elderly Chinese men PLoS One, 8(11), e Zhang, L., Curhan, G.C., Hu, F.B., et al. (2011). Association between passive and active smoking and incident type 2 diabetes in women. Diabetes Care, 34, Alberti, K., Eckel, R.H., Grundy, S.M., et al. (2009). Harmonizing the metabolic syndrome. A joint interim statement of the International Diabetes Federation Task Force on Epidemiology and Prevention; National Heart, Lung, and Blood Institute; American Heart Association; World Heart Federation; International Atherosclerosis Society; and International Association for the Study of Obesity. Circulation, 120(16), Retrieved from ahajournals.org/content/120/16/1640.long 9 Statistics Canada. Table Health indicator profile, age-standardized rate, annual estimates, by sex, Prince Edward Island, occasional, CANSIM (database). (accessed: June 17, 2016) 10 Statistics Canada. Table Health indicator profile, annual estimates, by age group and sex, Canada, provinces, territories, health regions (2013 boundaries) and peer groups, occasional, CANSIM (database). (accessed: September 14, 2016) 11 Public Health Agency of Canada. (2011). Diabetes in Canada: facts and figures from a public health perspective. Retrieved from chap5-eng.php 12 Canadian Diabetes Association. The Guidelines for the Care of Students Living with Diabetes at School. Available at 13 Canadian Paediatric Society. (February 2015). Position statement: managing type 1 diabetes in school: recommendations for policy and practice. Retrieved from diabetes-in-school 14 Canadian Diabetes Association. Self-monitoring of blood glucose. Available at diabetes.ca/charter 19

22 15 Health PEI. PEI Pharmacare Formulary. Retrieved from 16 Statistics Canada Survey on Living with Chronic Disease in Canada. Custom data request. 17 Canadian Diabetes Association. Self-Monitoring of Blood Glucose. Available at 18 Canadian Diabetes Association. Clinical Practice Guidelines Appendix 4: Self-monitoring of blood glucose recommendation tool for healthcare providers. Available at Appendix4 19 Questions and Answers, Health PEI, PEI Provincial Insulin Pump Program for Children and Youth (Accessed: August 15th, 2016), Retrieved from 20 Canadian Diabetes Association Survey of people with diabetes and without diabetes. Unpublished Report on Diabetes on Prince Edward Island

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